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  • Elmiron shortage

    I am so upset - could not get my Elmiron refilled - back order. I have been taking it for 3 months and have felt better. I also do instills once or twice a week. So now, I'm back to nothing but diet. I feel like I will have to start over if it is not available soon. I haven't had it for 3 days and I am feeling crampy already. My legs have also hurt for 2 days. I hope it will be available soon. The one med that helps this awful condition.

  • #2
    I know! This is horrible! I read about the shortage and just started crying. This medicine has helped so much and now we have to start over! That's really not fair!!!
    "Blindfolded fear does not lead to an awakening. Questioning with boldness does":woohoo:

    Diagnosed: Autoimmune Progesterone, P.F.D., Vulvodynia, IC.

    Comment


    • #3
      Good news!! I just read that there has been a shortage for a few months already and they are thinking the Elmiron will be back in stores by mid-July!
      "Blindfolded fear does not lead to an awakening. Questioning with boldness does":woohoo:

      Diagnosed: Autoimmune Progesterone, P.F.D., Vulvodynia, IC.

      Comment


      • #4
        Ordered elmiron from Canada

        I placed a order for Elimron in Canada, My Dr recommmended this for now since there is a shortage. Hoping its back in our local CVS soon!!

        Comment


        • #5
          Originally posted by jdsong1 View Post
          hoping its back in our local cvs soon!!
          amen!
          "Blindfolded fear does not lead to an awakening. Questioning with boldness does":woohoo:

          Diagnosed: Autoimmune Progesterone, P.F.D., Vulvodynia, IC.

          Comment


          • #6
            OMG! I just called to refill my rx from Walgreens and they told me they didn't have any! I called Walmart and they have only 120 left! I am getting 90 of them WHEW! Don't want to lose any ground. I've been on it for almost 5 months now.
            ~Valery~
            Dx with IC 3/2009 - Cysto w/Hydro
            Meds: Elmiron (400mg), Atarax (10mg), Elavil (20mg), Pyridium (as needed)

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            • #7
              I am so frustrated with Medco. I called them a couple weeks back and was told they show no report in their system of any upcoming Elmiron shortage even though I know other people here had been told they would not be getting anymore. Well the person I spoke to could care less about what I was saying. She just looks at a computer screen and refuses to do anymore research. She told me I couldn't have my RX refilled until today and I told her I'm sure they would be out of it by then. She wasn't willing to look into it further so I hung up. I ended up getting another RX from my dr. and taking it to my local Walgreens. They gave me 100 pills which I paid $470 out of pocket for. So I at least have enough to get me through another couple of weeks after I give birth. My drs agree it's really not a great time to stop it cold turkey.. especially since I know it works for me And the drs are leaving it up to me whether I decide to just take less of it everyday or how I want to go about it. I'm so frustrated that the manufacturer can't even tell us when they expect to ship more out. Does anyone have an update on this? I am crying today I'm so upset about this. I feel like a fricking drug addict. I told the Medco rep today that I wish she would take her job with a little more heart and offer to do more than just look at what a computer is telling her. So she put me on hold to go talk to a pharmacist and said they don't have anymore info either.
              The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
              First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
              Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
              Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
              Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
              BABY GIRL 10/28/08 *** BABY BOY 7/8/11

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              • #8
                Also a question for those who have gone outside the US for an Elmiron RX.. did you have to pay out of pocket for it? I'm assuming yes. I just found a pharmacy in Canada but it says their Elmiron also comes from Ortho McNeil so I imagine they are going to have the same shortage issues as we are right?
                The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                BABY GIRL 10/28/08 *** BABY BOY 7/8/11

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                • #9
                  Just Filled Elmiron Rx at CVS

                  No problem at all... just 2 days ago.

                  Comment


                  • #10
                    Originally posted by Charisse View Post
                    And the drs are leaving it up to me whether I decide to just take less of it everyday or how I want to go about it.
                    My urologist was going to try taking me down from 300 mg to 200 mg at my next appointment, so because of the shortage I tried doing it myself. I take one pill in the morning and one at night. I haven't had any adverse effects so far. At first I went back to being strict with my diet, but now I find I can still have my low-acid coffee or a glass of riesling without any ill effects.

                    This has allowed me to stretch a two-month supply to three months. If you've been on Elmiron for a while and you are doing well, it could be an option since your doctors have said it's okay if you want to try it.
                    Lori

                    40 y.o. mom, wife and marketing manager

                    "Il faut manger pour vivre, et non pas vivre pour manger." -- Moliere ("One should eat to live, not live to eat.")

                    IC symptoms began Feb 2010; diagnosed Mar 2010

                    Treatments:

                    Oral
                    Elmiron 3x day; Elavil 25 mg/day; Prelief (when I remember!); Benadryl and Prosed DS as needed for flares

                    Other
                    Acupuncture 2x/month; yoga; IC Diet; meditation and breathing exercises for stress; heating pad for flares

                    Comment


                    • #11
                      Found Elmiron finally

                      I also have struggled to find Elmiron, Walgreens was out, friend of husband's suggested calling around to Cvs and Costco, finally found at a Cvs, the bigger pharmacies in the city seemed more likely to have some in stock,best wishes to those still trying to get their Elmiron, I found perserverance was the key

                      Comment


                      • #12
                        Elmiron

                        I have been able to get my Elmiron RX for the past two months. My CVS had none last week so I went to Walgreen. They had none so I went to WalMart who had enough but had orders on backorder. One pharmacy suggested going to a mom/pop smaller pharmacy.

                        During this time I called my uro and they said they had not heard to date from the rep on this problem.When a patient had called in desperate was the first they knew of the shortage. This doesn't bode well for the manufacture.
                        I have an appointment soon to talk with my uro in case the July supply doesn't come through there are alternative meds.

                        What is the treatment called GABA-IC? I had an email on it but had not noticed any discussion.

                        Regarding the Canada Pharmacies: I ordered once and it was out of pocket for me. My insurance will not pay for anything from out of the US

                        Comment


                        • #13
                          The manufacturer needs to put out a clear explanation to the patients who depend on this drug!!!
                          Is it available or not... if not, when??? and why is it not available...

                          I know somone on here said that they got their RX filled at MEDCO mail order. My RX was sent back to me from them about a month and a half ago from MEDCO... They claimed tha they did not have any...

                          Now i am hearing that people have gotten theirs filled through MEDCO...

                          I am completly Clueless as to what the situation is with the status of this drug.

                          I think everyone will rest a bit easier when they know what is going on

                          If anyone has any True Substantiaed evidence from the manufactuer of Elmiron Otho McNeil... that the drug is indeed back in production and on the shelves of pharmacies, could you please post only people who really know the truth about this please....

                          Comment


                          • #14
                            Thank you for posting that Wolfaleena. I feel it is so very negligent of both the manufacturer and the FDA in not providing facts to those relying or beginning elmiron as a treatment for ic. I understand that they are on hold but they need to better inform the public on the facts. It is quite dissappointing that us suffering from IC are not getting treated with more respect...elmiron is the only of it's form out there and for pharmacies to state to talk to your doctor about another drug to take in the meantime is laughable. These pharmacy reps also need to be more informed!

                            Gina
                            Tried but failed:
                            aloe vera (6 weeks)
                            cysto/hydro
                            cystoprotek
                            elmiron (quit because of diarrhea) after one week
                            restarted gradually and fine now since July 1/2011
                            gelnique: made me feel like a zombie


                            On now:
                            elmiron: 200 mg twice a day
                            levsin: every 4 hours
                            ativan: bedtime only
                            PT for pfd. Amazing for my muscles.

                            Comment


                            • #15
                              It's obvious none of us are getting the same info/answers through Medco or the manufacturer. I got 60 pills this morning from a small mom/pop pharmacy but they are being told by two of their wholesalers that they can't get anymore now until August 22. That was the first I'd heard of an actual date but the pharmacist said don't count on it. I called Ortho directly and the woman I spoke with told me they are doing the best they can to ship out small portions of the medication equally across the US and that smaller pharmacies would be more likely to get it. Wolferina.. unfortunately none of us know so I wouldn't trust what anyone here says as absolute truth because I don't think the company is being honest. But that doesn't mean we can't share our experiences here. The pharmacist I spoke to this morning spent 20 mins telling me how a lot of the drug companies are doing this now and not giving any explanation as to why they have stopped producing enough or what the reasoning was. He suggested I write a letter to my congressman. I just might do that. It's bad enough there are no substitutes for this medication and I'm tired of pharmacists telling me to switch to something else.. there is nothing else! But apparently there are shortages on common drugs like morphine and fentanyl as well. He said for a long time they couldn't get a popular thyroid medication in a certain strength and it was a huge hassle.
                              The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                              First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                              Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                              Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                              Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                              BABY GIRL 10/28/08 *** BABY BOY 7/8/11

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